Scientific American Custom Media Good Medicine Health, Ethics and Innovation 2020 pp11-15. “A Price on African Genomes? “The scientific importance of diverse genomic data has triggered intense interest in genomic data from African people-and created ethical dilemmas. By Daniel S. Levine
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Summary of Article
In an apparently authorized study, Sarah Tishkoff (Penn Center for Global Genomics and Health Equity at the University of Pennsylvania), reported results from “180 people from 12 different ethnic groups in Africa. They found 5.7 million mutations of genes that were not contained in existing genetic databases, many of which are expected to be found to alter the way a gene functions.” Such a study highlights the limitations of current databases made up largely of European genomes. That’s the good news but in so many ways science like other endeavors reaching back to colonial history others rather than Africans have benefited from the “labor and natural resources” of the African continent. As stated by “Gordon Awandare, director of the West African Center for Cell Biology of Infectious Pathogens in Ghana, ‘African scientists have to be part of it, and it has to be some that is for the collective benefit.” “The principle should be that Africans are not just used as subjects for study.” The rightful full involvement brings many benefits from improving clinical and research medicine in Africa to specifically using the genomic data to “understand who [in the African population] may be at heightened risk for developing kidney disease, why some people have an adverse reaction to the use of codeine, and who may be most vulnerable to certain infectious diseases.” More directly, specimens collected with consent and married with medical data have an individual value of up to $5,000 and the article notes that “The U.K.’s government funded health-care system the National Health Service, generates nearly $6.2 billion a year through its marriage of whole-genome sequences to medical records.”
The path forward.
Back in 2010, “The San Code of Research Ethics” created the first “ethics code…by an Indigenous population in Africa. It requires community approvals for research projects, calls for researchers working with the San people of Southern Africa to adhere to values of fairness, respect, care and honesty.” Other recognizing past abuses or ethical lapses are jumping in to properly study with benefits to Africa and worldwide science including U.S. National Institutes of Health and Wellcome Trust providing “$176 million in funding for ten years to establish the Human Heredity and Health in Africa Consortium, known as H3Africa.” The African Academy of Sciences joined in 2016 and has provided an additional $12 million in funding.” Neil Hanchard (Baylor), regarding H3Africa, comments “The idea…was to root the projects that would be supported in Africa-that is the principal investigators have to be African, the work needs to occur in Africa, and it would be serving the individuals of the continent.” Adjuvant Capital (VC-limited partners include Bill & Melinda Gates), the Global Health Fund and Novartis collaborated to create 54Gene “which is building a curated genomic data set from African popluations.”
More help is need regarding Medical Infrastructure in Africa
New findings can’t benefit the population if they are unaffordable and can’t be distributed. There is an obvious “lack of modern health-care facilities, a shortage of medical professionals, and low levels for government spending on health.” “The dearth of resources makes it all the more critical that Africans share in the benefits of the genome revolution.”